Lessons from a Dying Baby: One Mother’s Perspective

What can we learn from a dying baby? According to a priest who helped facilitate the transfer of Baby Joseph, a terminally ill baby, from a Canadian hospital to a medical center in St. Louis so that he could receive additional treatment to prolong his life, this is a “teaching moment for our whole culture” about the value of life. I couldn’t agree more, although the issue is less about value than it is about quality.

This is not just semantics. As the mother of a terminally ill baby who was recently diagnosed with Tay-Sachs disease, a rare, progressive, fatal neurological disorder that sounds not so dissimilar from Baby Joseph’s condition, I wrangle with end-of-life issues every day. The quick degeneration of my son Ronan’s brain tissue means that all his bodily systems will be irrevocably compromised by the age of two, resulting in a gradual disconnect from the faculties that make life livable: movement, vision, taste, touch, sound. He will not be able to speak or move. If only his body was devastated but his brain was intact, if he had the smallest foothold in any mental process or physical experience, would his father and I do everything possible to keep him alive? Absolutely. We can make the choice to keep his heart beating in the same rhythm we saw on an ultrasound in 2009, but our son will be gone. Life is about living. We believe that using extraordinary measures to maintain life in a vegetative state constitutes cruelty. Our obligations as his parents are to maintain his quality of life, and to help him die with dignity, without pain, and in our home.

That the courts should not decide the fate of any child with parents to speak for him or her seems obvious, and I empathize with Baby Joseph’s parents in a raw and gut-wrenching way. Losing a child (or, in our case, preparing for that loss over the course of several years) is sheer hell; I can disagree with Joseph’s parents without judging them while simultaneously indicting a culture determined to deny death to the point of grasping at any methods that might prolong “life,” without an in-depth exploration about what it is we’re talking about. Our family is faced with gruesome choices: how will we know when Ronan’s quality of life has diminished to the point where letting him go is the more humane option? Is it when he stops swallowing and vocalizing, when he can no longer see us or experience our loving touch? Any of these eventualities may coincide with the option for a feeding tube (the most likely first intervention) or they may not. No crystal balls, sadly. These decisions are made more emotionally complicated by the fact that the medical community in this country has become so expert at prolonging life to the point of being unwilling or unable to engage in any nuanced discussion about what it is they’re saving. With the exception of hospice, doctors offer little help to parents who are navigating this bleak terrain.

Case study: the neurologist/pediatrician/geneticist we’re working with all believe that not to insert a feeding tube for a child with a “terminal illness” would be “ridiculous.” Some other (in all fairness, solicited) advice: “I wouldn’t want to starve to death.” “We don’t let babies starve to death in this country.” “Putting in a feeding tubes is an easy procedure.”

But we are not talking about a starving child living in a country where food is not available and that’s why they’re starving. When I worked for a relief organization I met women whose children had died from malnutrition, diarrhea, typhoid, war-related violence, meningitis, malaria, botched abortions, fevers and the flu. In Ronan’s case it’s not an issue of a growling stomach, a bloated belly. It’s an issue of whether or not he will be alive in the world – reacting to it, aware of it, in it in any significant way at all.

A feeding tube may extend life Ronan’s life by six months, possibly longer, but this paves the way to other, more serious interventions that Rick and I will not consider because all the while Ronan’s brain is fading, fading, fading, and then it is gone.

We were handed this competing worldview from the hospice doctor about our son’s “life limiting” illness: “When the body can no longer feed itself, sometimes it is uncomfortable to provide nourishment. It’s the body’s way of shutting down.”

“It is not cruel?” I asked.

“It is not,” he said, and then, knowing I needed to hear it, he repeated, “it is absolutely not. At each point along this journey we need to ask, ‘what will this lead to? What is most humane?’”

Were the Canadian doctors who refused to perform a procedure that has no possibility of leading to Baby Joseph’s recovery passing judgment on the value of his brief life as the Priests for Life insist? No, they were passing judgment on the quality of his life, not its value. Nobody is debating whether or not Baby Joseph’s life was valuable – to his parents and to the world. But the controversy surrounding this single baby gives rise to difficult questions that all of us, parents or otherwise, work hard to avoid considering: What standards are we willing to use in order to judge the quality of any particular life? What kind of life am I willing to subject my baby to? Children on respirators eventually die of pneumonia or infection; biology makes the ultimate decision, and it is a retrojection of meaning and purpose to call this God’s will. To say that God will determine the length of Joseph’s life is ludicrous and a clever mask for right-leaning Christian apologetics. According to this logic, those who don’t have access to extreme medical interventions would conveniently have a God who decided to end life more quickly?

Father Pavone claims that this is “not just about one baby, it’s really about us all.” Absolutely. Is Baby Joseph’s life valuable? Yes. But is it worth living? I would argue no. Were the Canadian doctors correct to withdraw life-prolonging care? Yes. Was it their ultimate decision to make? No. As a mother I am charged with making impossible decisions about my child’s right to life, and I argue that it is his right to live as fully as possible, in the world, with at least some of his faculties intact, and that it is my burden and my right to determine when his quality of life has been irretrievably compromised. When my son’s brain is devastated and his body destroyed by this disease, to refuse to prolong his life through medical intervention says nothing about how valuable he is to me, or how impossible it will be to quantify his loss. The specific life of Baby Joseph raises culture-wide issues not about the obvious intrinsic value of life, but about what constitutes its quality, what makes it worth living, and, most importantly, who has the right to make choices – the hospital, the courts, the family, an activist priest? – for a baby who cannot speak for him or herself. Would I make the choices Baby Joseph’s parents made? Unequivocally no. As his parents, did they have the right to make that choice on his behalf? Undeniably yes.

9 responses to “Lessons from a Dying Baby: One Mother’s Perspective”

This is so powerfully written. I absolutely cannot imagine what you and your family are going through everyday. I support every parent of a terminally ill child to be the sole arbiter of that child’s medical decisions. And I like your hospice doctor’s take on “life limiting” illness, that forcing nourishment into a tiny body that’s shutting down could actually be painful. A devastating decision to have to make (so counterintuitive for a parent NOT to feed a child), but one that seems the most humane given the situation.

I believe Ronan will let you know when it is time to let go. We communicate via thought and energy vibration as well as our known senses, and no two beings are more linked in that way than a mother and child.

You and Rick are brave to take the responsibility for these decisions on yourselves. I think the anticipation of the “guilt of the survivor” weighs heavily, overwhelmingly, on the psyche of the less brave who therefore need help and support in the decision-making process so that the burden isn’t greater than they feel they can handle. Enter the priest (of one stripe), the guru (of another), the crystal-gazer, shaman, et al. So, I see you as an exception to the rule, but an exception that is threatening to a large swath of the community for whose members, perhaps of less heroic interior resources than possessed by you and Rick, generate institutions which form rules to follow for just this circumstance in life. I don’t mean this as a judgment of anyone or a condescension toward anyone. For me it’s a moment of humility, anxiety, sadness, and, oddly enough, hope. So, I send you my love, Em and Rick and Ronan. We loved Rone’s birthday party! Such life there–a baby born into ambiguity craddled in my arms. I was filled up.

I feel the pain of these two mothers. As I Mom who had to make such a decision back in 1974, before such decisions were discussed, I remember the pain of trying to discern what kind of quality my infant daughter would have. It is so important to remember that each case is very different from another, and that each parent must deal with the pain and decide what is best for his/her family. I cannot help but think that this baby’s initial decision was decided based on Canada’s HealthCare which is based on economics. Not at all sure what I would have done. Have not heard what his clinical diagnosis is, though I suspect it is an autosomal trisomy . To me, as a bereaved parent of some 30 years, the diagnosis is not so important as the quality of the life the child has or would have.

“When the body can no longer feed itself, sometimes it is uncomfortable to provide nourishment. It’s the body’s way of shutting down.”

This line in particular resonated for me.

I strongly recommend a self-published book by a local Santa Fe nurse named Denys Cope (interesting, Dickensian last name) entitled “Dying: A Natural Process.” It has informed some very important decisions in my own life. Denys can be reached on 505 474 8383 or via denys [at] cybermesa.com. (Hope those are current contact points.) She also has a web site: http://www.livingthroughdying.com.

I am a retired pediatric nurse and mental health therapist. I fully support your common sense decisions. It takes a lot of love to treat one’s child with this sort of humanity. Any other decision would be to put yourselves, your doctors, the opinions of others ahead of your child’s needs. Bravo. And may you see so much love and compassion in the world in your lifetime as to be comforted for your loss.